I have attempted to try and reduce pred from 20 mgs to 15 as I am currently in limbo re diagnosis ......
yesterday was a really bad day .. Mobility rubbish and felt under the weather , a bit like I was running a bit of a temperature , shaky and poor balance .
woke very early ... Awful pain back in my big toe joint and left thumb .... 2 hours have taken my pred .. Pain easing
I have found that during my journey ... When I have felt very unwell in myself it seems to follow with a different area being 'attacked '
is this an experience others share ?
today I feel better in myself , despite the discomfort and the deep pains in my hips and lower back appear to have eased .
i did have a session on Thursday with a Bowen therapist which I would really recommend to others .
Hi Helen, sorry to hear you are in pain. I have been reducing by 2.5mg every 6 weeks from 20mg, then 17.5mg then 15mg and at present am on 12.5mg of pred and yes a few aches and pains in muscles but cannot compalin really.
Eileen is the lady who can answer your question on Bowen Therapy. Good luck. Pat
I am new to all this but have PMR a year and 6months your symptoms sound just like mine pain in my toes and thumbs also dizzy and poor balance, I am hoping I will get lots of advice from this site x
Don't try to reduce by 5mg at a time - it is FAR too big a step. No reduction should be more than 10% of the current dose, 5mg from 20mg is 25%. Many people even struggle with 10% but it is more likely to work.
Other than that - your session with a Bowen therapist probably will have woken up a few sleeping dragons! The things they do will release the cytokines from the trigger points in your back - the same cytokines that cause PMR in general when they are all through your system - and cause more generalised yuk. Did s/he tell you to drink lots of water? Did you? I always felt better but worse if you see what I mean the next day - but never as bad as she told me I would feel! And it is very common for balance to be off after a Bowen session - your body has to get used to a new balance set up.
that is was my thought of going back to 20 mgs , but a little unsure when to consider a reduction . I have now got 2.5 mgs from the GP on Friday so I could go to 17.5 but so unsure ..... When ........
the bowen therapy was amazing , within half an hour I could feel the pain in my hips and back easing .
i am back again on Wednesday , would recommend it to all .
she used Emmett (not sure if I have spelt it correctly ) technique and within my session the immediate change I noticed was with my balance .
Cant really describe it , but I felt more balanced ... Grounded for the first time in about 6 weeks .
A big thank you for your recommendation , it offered release from pain , and has improved my coordination and balance by 50% Didn't skip out but felt so so much better .
I forgot to mention the difference I noticed in my arms ......
although quite painful during and following my session ,the following day I was very aware that they I did not appear to be experiencing such deep painful muscle pains . Was able to lift the kettle without it feeling as if I'd been weight lifting .
what I have found during this journey is that each day is different !!!
not sure what I'm doing really !!!
but I have had to learn to be patient !!! Maybe not one of my qualities ...... The lack of energy , pain and poor mobility has made me have to stop for the first time ever !!!
I do wish my rheumy had told me there would be problems and not said the pred would solve everything. I just kept thinking that there was something wrong with me.
Apparently it isn't unusual for clients to leave a session and bounce off the walls walking down the corridor! My lovely lady always warned me to be careful!
I recommended it to someone on another forum and gave him a video link - immediate response was "sounds like a load of hooey"! This from someone who had booked a session of acupuncture!
An NHS Trust in the NE of England is trialling it alongside pain management for a period, like acupuncture has been offered in the past. I just hope it meets with the approbation I've come across.
Yes, PMR attacks different areas --- the pain goes away and comes back again someplace else. My back pain seems to stay, and I am considering Bowen Therapy for this if it does not get better, soon. This is wishful thinking.....
I had been on 20 mg of prednisone, but tapering down slowly 1 mg every two weeks. I am on 17 now --- and proud of it! 2 1/2 had been a too fast reduction resulting in flares in the last 6 months and since diagnosis of PMR. This is my experience, and everybody is different.
Once your symptoms are stable again and the Bowen is having an effect you could try a reduction again. I've already given you the links to the thread with the slow reduction. You may not need to start at the very beginning but trying the new dose for one day and taking the old dose for a couple of days before another single new dose day would be a good place to start.
you have given me the links and I will now look at a slow reduction rather than being instructed by the medical professionals who are insistent on ......emphasis of the side effects of pred rather than the management of the symptoms .
thankyou for your support having a bad day today unable to do anything for dizzy feelings back pain etc . I have a doctors consultation in the morning. so I need to sort out my steriod dose